A son’s wisdom and a father’s vulnerability

Something beautiful happened a few months ago as my wife and I were editing a new book on the parable of life with our son Edward – who has Down syndrome.

We were working on a chapter that explored the challenge between “choosing for Edward” and “letting him choose,” when he came down the stairs with a stack of DVDs in hand and just stood there.

Because Edward can sometimes fixate on a single movie, we covertly rotate his DVD library regularly and keep the films he’s most drawn to tucked away in another room. Clearly Edward had uncovered our hidden stash and was now holding some of his favourites.

It took just a few seconds for us to realize that he was asking for permission to watch them – not with words (he’s mostly non-verbal), but by waiting.

It was a level of communication we rarely experience with Edward, and a lovely expression of his growing agency. He had decided to override our movie-rotation decision and wanted to tell us what he was doing.

While this might seem a small thing, for us it was wonderful – to the point of tears.

Thy Tender Care

We couldn’t help thinking that the experience of writing a book on the gift of Edward’s life – and all of the attentiveness that has grown in us by doing so – played a big part in allowing this DVD moment to play out. The more we’ve been able to see Edward, and the more he realizes he is seen, the more he’s been freed up to become himself.

And not just Edward, but us as parents as well. In caring for a person with Down syndrome, we’ve become more ourselves.

Over the past year, as people have asked me what this new book is about, I’ve struggled to come up with a clear answer. It’s not just about Edward and a theology of disability, nor is it merely about me and a theology of caregiving. It’s more about a caregiving God who mysteriously brought two very different lives together so that both could flourish – a life that needed a lot of help, and one that was far too self-sufficient.

Thy Tender Care is a book about a God whose healing power is made perfect in weakness – a “weakness” that Edward gracefully embodies in how he fully accepts himself and freely receives the care of others.

For a father whose entire modus operandi was about performing well enough to matter, and earning whatever he received, Edward’s wisdom has been transformative.

More than that . . . it’s saved me.

Leaning on my son

When God used Edward to hold me in a time of unsettled panic, I experienced the depths of Edward’s strength in a way I’d never known before. In the face of his father’s anxiety, he was simply there – unfazed, wholeheartedly loving and fully with me.

“I thought about Edward’s grounding presence for days after my panic attack. His weakness made him approachable, and my weakness enabled me to draw near and appreciate his strength. As far as I know, Edward doesn’t get existentially anxious – he’s levelheaded and content and knows who he is. As I leaned on him in my weakened state, I could see his strength and peace like I’d never seen them before. In that moment he was more grounded than I was – stronger than I was.

It took a severe panic attack for me to realize that I was still carrying a bias when it came to Edward. The ‘limitations’ that come with Down syndrome blinded me to the strength of his very gentle, settled, and present nature. This was the first time I’d noticed this in Edward. My vulnerability and weak­ness, via a panic attack, enabled me to see him for who he really is.”

Months after that experience, I interviewed a leading Down syndrome researcher and learned that people with Down syndrome have a different sympathetic (fight, flight or freeze) response system than most of us – one that leaves them more relaxed in stressful situations and more of a non-anxious presence. This strength was a perfect antidote to my weakness. Edward’s strength-in-weakness was a pointer to God.

The heart of God

This is how life with Edward has gone: I notice something about his innocence, ponder my lack thereof, and realize something about the childlike heart of God. I take note of how readily Edward follows others, admit my propensity to always want to lead and then conclude that Edward is better at emulating the “Jesus who followed God in all things” than I am.

For over 30 years I’ve noticed all of the unique ways that Edward images God, and in the seeing I’ve been changed. I learned how to receive life as God gives it, how to accept my deeply sensitive nature, how to let go of control and how to follow God more freely. Only God could write a healing story like that – only God would choose someone with no words to be this eloquent.

I suppose this is the point of Thy Tender Care – that God is imaged in the life of a young man with Down syndrome. Edward has something to teach all of us about God’s nature and how the kingdom of God works – about loving others just as they are, accepting the good gifts of community and being who God made you to be in the world.

Somehow, by naming all that is different in Edward, I’ve been able to embrace all that is different in me and also in others. My capacity to appreciate diversity has increased and I’ve become more curious, attentive and humble.

More human.

I owe much of this change to Edward. He’s taught me more about God than any other person.
God, after all, sees and delights in us and wants each of us to know it. God knows how different we are and embraces that diversity. We are made in the image of a God who imagined, sees, loves and includes everyone. The more we reflect God’s ever-inclusive heart, the more we’ll recognize just how seen and appreciated we are.